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my experiences and daily life as a parent of deaf children

I have opened the can of worms.

I have attempted to write this blog several times already. Each time, I seem to reach a dead end for some reason. It is a subject that is sure to ruffle the feathers of many people in the deaf world, and so, trying to explain my experience whilst not wanting to offend anyone, seems like an impossible task. Processing this option out loud, is also something that I find quite exhausting, and so often, a few thousand words into my thoughts and feelings about possibly the most controversial topic in the world of hearing loss, I’ve just given up. It is however, a topic that is eventually addressed by many families with deaf children, and so I really do want to share our experience of investigating this possibility. If you haven’t guessed it by now, I’m referring to cochlear implants. I considered only addressing this issue on the blog sometime in the future once our decisions have been made, as a retrospective account of our experience. The questions, doubts, fears and opinions that one encounters in the middle of such a decision making process, makes this tug-of-war experience worth sharing whilst my thoughts are not neatly ordered and at times even seem contradictory. This is the reality of being a parent with the question of CI set before them.

Medicine is a profession filled with topics of controversy. Whether they be ethical or treatment based, most specialty fields will eventually expose areas where there is no black or white. In all my exposure to a range of “hot topics”, I have never encountered the extent of controversy that the cochlear implant creates. On one side of the spectrum, ENT specialists may make a parent feel like their only hope for their child’s future is a successful CI…that this is the miracle “fix” of deafness and consequently a sense of urgency results. On the other side of the spectrum, are the extremists who see CI’s as dangerous procedures that could only harm one’s child, rendering them with chronic pain, and horrendous complications. On Facebook a few days ago, within 24hours, I viewed a post revealing a miraculous “switch-on” moment when a child responded to sound the first time when his cochlear implants were activated, as well as an article of how a child died because of their cochlear implant. The opinions out there are extreme, and really can get quite ugly. For a parent who wants what is best for their child, this makes the decision very difficult, and for a parent of three deaf children whose needs may be different, this decision almost seems impossible at times.

Everywhere I go, someone is eagerly sharing their opinions about whether or not we should have our girls implanted. Once I was paying for some pies at the bakery. The teller took one look at the girls’ hearing aids and confidently suggested that I take them for cochlear implants. She had read about a success story in a magazine, and thought it was quite obviously the right option if I wanted to “cure” my daughters’ deafness. We had never met before, she didn’t know my name or anything else about us. Well, she knew what we were having for lunch, but that was about it. The most painful arena where this surgical option is often enthusiastically suggested, is at social gatherings like children’s parties where we find ourselves at. Being doctors, a large part of our social circle are medical people. At one such party, a doctor, who has no experience with deafness, who has never even met us before, had been staring in our direction for quite some time. Eventually, he came over and his opening line of introduction was, “have you considered cochlear implants?” I just smiled, and said that I was investigating the option and hoping that hearing aids would provide adequate amplification. “You should really consider implants!” was his response. I made a 2 second weigh up of my possible responses. Eventually, opted for a conversation killer, “Yes, thanks, we’ll look into it,” and off I went to sooth my frustration and fear with a purple cupcake. The truth is that my response in my head was, “Hi, my name is, Bianca, by the way. You’ve probably noticed their hearing aids, or possibly been part of a group discussion about our three girls. Do you actually know what CI’s entail? Have you ever seen the surgery, know the success rates, know what the possible complications are? Are you interested in finding out how their hearing aids are working? Have you any idea of how much the whole process would cost or what the rehabilitation thereafter entails?

To shed a little light on a mammoth topic, and address some of the questions that I wished I had had the energy to pose to this enquiring colleague, let me start by briefing you quickly on what a cochlear implant actually is. Let’s start with the basics (and this really will be a crude description as the cochlear is an extremely detailed and incredible structure)…the cochlear is a small snail shaped structure in the inner ear. A part of this structure is called, the Organ of Corti which contains thousands of tiny hair cells that are stimulated by vibrations produced by sound waves that enter your ear, and then convert the sound waves into signals that go to the brainstem, via the auditory nerve, for further processing which in turn makes us “hear” the sound. The cochlear is a remarkable little organ that has been carefully crafted to allow us to perceive sounds of much complexity and a wide range of frequencies. It’s complicated and incredible! In the case of sensorineural deafness, problems with little hair cells are often the cause, which is where the cochlear implant becomes an option. A cochlear implant, basically involves an electrical wire being threaded through the coils of this organ. It has electrodes that receive the sound signals, instead of the hair cells, and then send electrical signals to the auditory nerve. The sound perceived by the brain is robotic, and those sounds then need to be recognized or learned in relation to previous sounds that may have been heard. For example, imagine hearing the sound of the word “water”, now imagine a very robotic voice saying “water”. If you did not know that this is what was being said, it would take a while to recognize that the distorted sound that was being made, was actually the word for water. So basically, you’re in square one when it comes to learning to listen. With new technology, I’ve been told that there is much improvement with the quality of sound and preservation of normal acoustic sounds, but let’s face it, 30 odd electrodes hardly seem impressive when compared to several thousand God-given hair cells. In saying that, though, if your cochlear is not working as it should, then you don’t have much to lose and having access to any sound, in my opinion, would be fantastic. The surgical procedure can cause damage to some of the hair cells that may have already been working, rendering an ear that did have some residual hearing, completely deaf. Although, not very common, the possible risks of the procedure include things like meningitis and other infections as well as the common anesthetic risks that are related to any procedure. The rehab thereafter, is definitely the most daunting part for me, involving years of intensive therapy to get the child to learn to listen again and learn to translate their new sounds into language. Most CI teams (surgeons and therapists) will enthusiastically encourage a signing family to remove all forms of visual communication from their child’s environment in order to encourage more opportunities to practice listening and engage with the new sounds that they are now able to hear. That may mean communication frustrations all over again, relationship strains and a change of schools.

I have met and witnessed children who are now teenagers who were implanted early, and one would never know that they were deaf. They speak beautifully, are coping well in mainstream schools and as a whole, appear to be the “poster children” of a deaf “success story”. Then I know several children who still don’t speak a word, in spite of being implanted. They do not always work, but when they do, it’s evident that they can work well. Really well. And then there are loads and loads of deaf people who may have been candidates for CI (not everyone qualifies to have a CI, but I won’t go into this now), weren’t implanted and have lived extremely successful lives in spite of not being able to speak. These all lead me to the question of what the desired outcome is? What am I viewing as success? Again, Am I using what’s ordinary to define “normal”? These questions have different answers for different parents, which I believe is absolutely fine and reasonable. If success equates to speech, then possibly, CI’s are worth a try. If success equates to communication and fluent language, knowing you’re loved and having equal opportunities to reach your full potential and live your life to the full, then are the risks, stress and cost involved, worth it? Will my girls resent attempts at “fixing” them or will they be disappointed at not being given possibly better access to sound than what their hearing aids may be providing? I am not sure.

Currently, we are trying to ascertain the full benefit from their hearing aids before actually making our decision, but my gut feeling is that they would be candidates for implantation on their profoundly deaf ears. For interest sake, a CI costs in range of R300 000 per ear. The most comprehensive medical aids only pay a portion. I have 3 deaf daughters, you do the math.

My intention of this post was to expose the extreme bias that exists around this topic and highlight the difficulty that a parent consequently has in making this decision. This is a decision that needs to involve the family and not be made on their behalf by a professional. There is no black or white, no right or wrong, in my opinion, but rather a weigh up of very individual and unique pros and cons for a particular family and a particular child. In my case there are three, which complicates things somewhat. My definition of “success” does not equate to speech alone, and I appreciate the other less measurable variables such as the emotional impact etc. I have viewed hundreds of successful, “switch on” videos on YouTube and read and felt quite ill over the horror stories and tragedies related to this procedure that have been posted on many platforms. I am well informed and supported, and although appreciate that most people mean well, I’m not looking for further opinions.

I am so grateful to be communicating with my precious three, and that is definitely my focus for now, I’m not sure of what our decision will ultimately be, and should we opt out, we may decide to opt in at a later stage. Again, I just don’t know. What I do know, is that the lives of my daughters and my family are in very capable hands. The hands that designed the complicated snail shaped structure that men have failed to perfectly replicate. Irrespective of our decision, in the end, everything is going turn out okay.

4 thoughts on “I have opened the can of worms.”

Wow, more complicated than the average person realises. We know that through prayers and the loving care of a Mom and Dad like both of you, the good Lord will lead you to make the correct decisions for your beautiful girls.

Well done Bianca, on so eloquently putting across the many pros and cons that parents have to weigh up when deciding on cochlear implants. Keep on sharing your thoughts and journey around this process.. it is much needed.

Praying for you bee. God has blessed you guys with great wisdom, as well as medical knowledge to make this decision, but most of all He has blessed you with a knowledge of Him to know, as you say, that whatever the outcome everything will be fine!